Thursday, August 8, 2019


The FDA (US Food & Drug Administration) first identified a possible association between certain breast implants and the development of Breast Implant Associated Anaplastic Large Cell Lymphoma (BIA-ALCL) in 2011 [1]. On July 24, 2019,  ALCL advocacy groups and the global community of implant users finally achieved the long awaited recognition about this emergent disorder when the FDA announced Allergan's voluntary recall of their textured implants.  Such a recall raises a level of urgency about the public health risks behind BIA-ALCL with the hopes that other manufacturers would soon follow this lead.  "Whenever a company accepts responsibility to pull a risky product from the market, they usually aim to correct product flaws to eliminate public health risks. Recalls also set a great precedence for new research that can add to our scientific understanding about preventing the disorder and other paradigms like it", states

Note that ALCL is not breast cancer - it is a type of non-Hodgkin’s lymphoma (cancer of the immune system) that in most cases is found in the scar tissue and fluid near the implant, but in some cases, it can spread throughout the body [1].  A significant number of cases are recorded to appear within 8-10 years after implantation but new reports are showing symptoms earlier.  A recent report from the American Society for Aesthetic Plastic Surgery states that the first symptom of BIA-ALCL is usually a swelling of the breast between 2 to 28 years after the insertion of breast implants, with an average of about 8 years after implantation.  A theory that the increased surface area of textured implants allows a higher number of bacteria around the implant, which forms a biofilm in some patients, and can result in chronic inflammation, ultimately leading to a proliferation of lymphocytes. [2]

Feat. Dr. Patricia Clark
PinkSmart News conducted an interview by late 2018 with Dr. Patricia Clark of Ironwood Women's Centers and the Ironwood Cancer and Research Centers in Scottsdale, AZ.  She provided great insight on various breast-related cancer topics, and she also helped clarify many areas of the BIA-ALCL associated Lymphoma crisis.  Dr Clark is a respected nationally recognized onco-plastic (reconstructive) surgeon. These surgeries plastic surgery techniques like breast lifts or breast reductions with cancer surgeries to conserve the breast and reconstruct the defects without implants.  Hence, if she performs a lumpectomy for breast cancer, rather than leave a lumpectomy defect or a deformity in the breast, she can modify techniques used during cosmetic breast lifts and reductions to fill the hole, repair the defect and prevent deformity. She might even operate on the other side so that the two match. She teams with leading board certified plastic surgeons to ensure patients have access to the full range of both mastectomy and partial mastectomy reconstructive options. 

Dr. Clark and others speculate the true number is of BIA-ALCL cases is likely under-reported to the FDA registry. Incidence estimates range from 1:3817 patients to 1:30,000. The treatment of BIA-ALCL that has not spread beyond the capsule of the implant is simply to remove the capsule and replace the implant. Because it forms in a different manner than other primary non-Hodgkin lymphomas that arise in lymph nodes, chemotherapy and radiation therapy are rarely necessary unless diagnosis is delayed and the disease has spread beyond the capsule. There are likely patients with implant problems who have had the implant and capsule removed, and for which a thorough pathologic examination may not have been done, but for whom the patient’s surgery was curative. Because of increased awareness, this is less likely to happen now than in early years.  A quick raise of hands to see who had treated a case by the hundreds of reconstructive plastic surgeons attending the 2018 BC3 meeting sponsored by Georgetown University resulted in more than 20 surgeons who had personally seen or worked with ALCL cases. At that time, records showed less than 500 cases being reported internationally with 16 deaths from over 30,000,000 implant placements. 

A capsule is tissue laid down around the implant that is part of the body's normal process of walling off any foreign body.  In addition, the formation or buildup of seroma fluid doesn't mean a patient is going to get cancer. That clear fluid that appears during injury or infection, or in the case if implants, is the body’s reaction to a foreign matter and to large, raw, cut areas of tissue.  Hence, every single breast implant, whether it's smooth or textured, forms this capsule. When capsule become too thick, contract, develop persistent seromas, or start to deform the implants, plastic surgeons remove and replace the implants and perform a capsulectomy- the surgical removal of scar tissue and capsule.  In doing so, this complete removal procedure inadvertently treats the disease successfully since the lymphoma is usually confined to just the capsule.

Manufacturers developed textured implants as an upgrade to the smoother counterpart.  Smooth implants would result in the shrinking of collagen and the fibers, leading to shrinkage and eventually causing the implants to become hard as a rock and painful. Textured implants were designed to prevent this while accommodating many shaped implants from rotating or shifting over time. Some shapes are thicker on the bottom, thinner on the top, and more teardrop-shaped like a breast. With textured implants, one Because of the texture, a leading theory of cause of BIA- ALCL is the high amount of surface area with more little nooks and crannies can trap more bacteria, which causes more immune cells to move in (lymphocytes) which are subjected to prolonged inflammation and can become cancerous. Other theories include allergic reactions associated with textured implants, and genetic factors.

BIA-ALCL may occur in all implants, smooth as well as textured, but most are associated with Allergan Biocell textured implants. These have now been recalled from the market. Since the risk of development of BIA-ALCL is so low, the FDA does not recommend removal of these implants if there is no swelling or pain. If a patient develops a seroma or fluid around the implant, this should be sampled and sent for pathology evaluation.

A current update of an estimated 1 in 30,000 textured implant risk has been reported and 573 unique and pathologically confirmed BIA-ALCL cases worldwide related to breast implants [3]- according to Dr. Clemens at the July 2019 review with the American Society of Plastic Surgeons.  But prior to this year’s recall, the use of textured implants remained prevalent and the risk figures showed an inconclusively low number and did not warrant any public safety action or manufacturer’s recall. 

“BIA-ALCL is not the same disease as the lymphomas that you see spontaneously arise in lymph nodes in the general public. It's not a disease that you treat with chemotherapy or radiation. This is somewhat limited to the implant capsule in most cases. Proportionately speaking, it is very rare … it can invade the local tissues you can have wide-spread disseminated disease or, but that's stunningly rare.”

Dr. Clark’s most recent experience with an ALCL case emphasizes the multidisciplinary care patients receive. This included radiology, pathology, medical and radiation oncology and plastic surgery. Capsules must be completely removed and are often densely adherent to the chest wall and even the periosteum (lining) of the bone of the rib. This increases complexity and difficulty in removing every single piece of it.  She recently collaborated with Scottsdale plastic surgeon Dr. Joe Berardi due to his previous experience with BIA-ALCL and meticulous approach to capsulectomies.

In summary, it is believed that the two strongest factors that provoke breast implant related lymphomas included formation of a BIOFILM; an infectious coating of bacteria embedding themselves in the surface of the implant. This biofilm recruits the immune cells, which develop the cancer.  Also, research have found immune-mediated or allergy-like eosinophils, indicating there could be an allergic component to development of ALCL.   

Biofilms are not penetrated by antibiotics and are poorly penetrated by immune cells which can result in chronic, sub-clinical infection that the body and antibiotics can’t clear.  The capsule is a physical barrier between the implant and the normal breast tissue within which it has been inserted.

Each time a product is recalled, it reflects upon the manufacturer’s aim to rectify a known issue that could cause eventual harm to the consumer. The community of implant users and medical professionals have viewed enough cases (and fatalities) of BIA-ALCL historically that the July 24 recall marks a significant touchdown toward the industry’s recognition and global restitution of the possible disaster that this product has yet to face. “It validates the seriousness of the situation, because the layperson can understand that a company doesn't do that… (unless) there's a serious problem”, says Jennifer Cook of

“I’m grateful for the chance that future women will develop this lymphoma has been greatly reduced. Its not only Allergan implants that create the risk, but it does appear from current data that their implants create the highest risk, and so with those implants being removed from the market, its going to greatly reduce the number of new cases of this disease being created. There's obviously a lot more work to be done but it is the first step, and an additional part of that equation for me was just awareness because all the women out there with this lymphoma, or the implants that can create it, still in their bodies right now, may have no idea about this lymphoma because no one is obligated to warn them. So any immediate attention potentially can reach them and so the withdrawal created more media attention and then hopefully, more awareness.”

By: Jennifer Cook (

August 8, 2019 – A new article has been published out of MD ANDERSON in a Modern Pathology Journal addressing the proper way to evaluate and sample an implant capsule that has been removed from a patient suspected of Breast Implant Associated ALCL.  The article indicates that the disease can often be missed if proper and thorough evaluation of the capsule is not done.  Not only can the disease be missed but often positive margins of lymphoma on the implant capsule can be missed and this can create a risk of incomplete resection of the disease w/c increases the risk of recurrence and worsens the patient's prognosis.  Therefore, a person who is suspected of having BIA-ALCL should have their surgeon and pathologist become aware of these latest new recommendations on proper pathology protocols so they can benefit from the state of the art information on how to diagnose and treat this disease.  (See complete report:



Patricia Clark, MD, FACS is a board-certified general surgeon with a passion for treating breast cancer and for using oncoplastic surgery to improve outcomes. Additional plastic surgery training led her to become nationally recognized as a teacher of oncoplastic surgery at national and international conferences. These techniques reduce the need for mastectomy in patients with complex breast disease and they minimize deformity. She is an active member of the American Society of Breast Surgeons, the Society of Surgical Oncology, the American College of Surgeons, the National Consortium of Breast Centers and the American Society of Breast Disease. She currently practices at the Ironwood Women's Centers in Avondale AZ. (

Jennifer Cook was diagnosed with Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL) in August of 2017- which started her on a road to major research to collect all information about the disorder as well as seek out an international social media group of fellow survivors and a supportive community ( Today, Jennifer stands as one of the top advocates of the group, conducting outreach efforts to seek out other victims of this health issue. She is also an active voice in many leadership circles dedicated in the fight to bring public recognition and corporate accountability to this crisis. (See Jennifer's interview on Survivor Stories)

Robert Bard, MD, PC, DABR, FASLMS has paved the way for the diagnostic study of various cancers both clinically and academically. His main practice in midtown, NYC (Bard Diagnostic Imaging) uses the latest in digital Imaging technology which has been also used to help guide biopsies and in many cases, even replicate much of the same reports of a clinical invasive biopsy. Imaging solutions such as high-powered Sonograms, Spectral Doppler, sonofluoroscopy, 3D/4D Image Reconstruction and the Spectral Doppler are safe, noninvasive, and does not use ionizing radiation. His commitment to lead the community of cancer imaging and diagnostic experts has led to the establishment of the "Get Checked Now!" campaign.

Cheri Ambrose is a co-editor for various publications such as PinkSmart News, the Journal for Modern Healing and First Responders Cancer News.  She is a patient advocate for many cancer-related programs and often contributes her time in cancer research fundraising events.  As the communications director for the NY Cancer Resource Alliance, she manages community outreach, partnership missions with other cancer foundations and research organizations and attends educational functions for cancer awareness. Her latest public projects include the launch of and  She stands as the current President of the male Breast Cancer Coalition (

3) American Society of Plastic Surgeons: BIA-ALCL Resources | By the numbers, and what they mean. By Mark Clemens, MD
4) Modern Pathology:

Saturday, September 22, 2018

CANCER 101: The Essentials of How Cancer Happens (and Doesn't)

By Dr. Patricia Clark

Our DNA and our genetic material is breaking and being damaged every single day. That's just the wear and tear of life. Our bodies have genes and mechanisms to repair broken DNA, and our immune systems have mechanisms to identify and destroy cancerous cells. With breast cancer, 5% to 10% of people have a genetic predisposition that raises their risk of development of breast cancer.

If we have a cell that can't be repaired, our immune system can recognize it and our natural killer cells can destroy it. So that's how things ought to work. Eventually, you accumulate MUTATIONS over a lifetime as more genes and genetic information are damaged and break down. Somebody like Angelina Jolie had a gene that predisposed her to get breast cancer. She had a gene called BRCA which is a DNA repair mechanism gene. She had one copy of that gene that did not work causing an 87% chance she was going to get breast cancer. She decided with a risk this high for the particular genetic mutation she had, she was going to get mastectomies and remove her ovaries, which were also at risk.

Genes are like a paragraph of instructions that tell a cell what it is supposed to do, such as what proteins it should make. If all the letters in the instructions are in the correct order, or the gene is “spelled’ correctly, the gene can be read by the cell and everything works. Pathologic mutations in genes have to occur in very specific locations for a cell to no longer be able to understand the instructions it carries. We have all read paragraphs where letters or words are left out, but we can understand the meaning of the paragraph. 

Changing the letters at a key location though, can change the entire meaning of the paragraph of instructions. For instance, If I have a sentence in that paragraph with the word CAR, and I change that "R" to a "T" it now reads CAT. That might change the entire meaning of the message to the cell, and it will no longer be able to carry out it’s functions. That would be a pathological mutation and raise the risk of inheriting cancer or of a cell becoming cancerous.  Had I changed the C to a K, and made the word 'KAR', the cell may have still been able to read and understood the word carrying that mutation and can happily continue making the proteins it was supposed to manufacture. This is why some mutations may cause no harm to the cell as long as the cell can still read and understand it’s instructions while other mutations can stop a gene in its tracks, being rendered pathologic. 

This is the simplest way to describe mutations.

A lot of mutations aren't going to matter. You have to mutate them in very specific spots before a cell cant read it. To get a cancer, it's not enough to have one mutation. You have to have one or more specific mutations to enable cells to divide uncontrollably. Then you've got to have a mutation that allows it to get out of the organ that it's in (such as a milk duct) and escape into the nearby adjacent tissues, forming a tumor. That's a whole other gene that has to be bad. You have to have a gene in there that allows those cells to bring in their own blood supply so they can keep the tumor fed and alive.. So that's yet another genetic mutation.

Like with breast cancer, people don’t die of the breast cancer in their breast. They die if it traveled into their entered their bloodstream and lodged in their lungs, it lodged in their liver, it lodged in their bones it lodged in their brain... if it had the mutations it needed to escape the breast and lodge in an organ system that you need. In order to do that it that takes a whole other set of genetic mutations. We can test the tumors for these mutations.  Putting a garden variety breast cancer cell in the lung (per se), may be sort of like putting a Palm tree in Alberta, Canada. You can put a Palm tree up there, unless it has a set of very specific genetic mutations, it's not going to survive the winter up there.

So that's why all of us aren't running around with cancers. 1 in 8 women will develop breast cancer over their lifetimes. We have genetic mutations that we accumulate, a lot of them meaningless. Then the other thing is you've got to have the exact right mutations all lined up in a row for something to become cancerous. For the same reason not all firefighters in 9/11 die of cancer, it also depends on genetic predisposition and a person’s ability to protect from and heal environmental insults.  We see families where it seems everybody's getting cancer but we can't find a nice single smoking gun or a silver bullet that “caused” it. If cancer were a single process or silver bullet, we’d have it cured already. We're going to have cancer forever because you can't stop the body from mutating or accumulating genetic damage. If you could, we would all be immortal.

So that's the briefest of the basics. Understanding cancer from the angle of genetic mutation and  predisposition helps you see why some people get it, some people don't. Some people may not have the robust repair mechanisms or the lifestyle to fight it off.  Many are sedentary-- they don't exercise, they drink alcohol, or have other lifestyle risks that are another part of it. 

There are also a lot of environmental factors that can turn genes on and turn genes off. That’s a whole other layer. You can be predisposed because you carry a unique malfunctioning gene ... which carries a variable increase in somebody's risk.  They may have a 40% risk they're going to get cancer- or you can see it as that there's 60% risk they never will. We have proto-oncogenes that must be turned on to cause a tumor to form, and tumor suppressor genes that must be turned off to allow a cancer to form. We may or may not be exposed to the environment inside or outside the body that's going to turn it on - or off.


Awareness for a Cure welcomes our newest cancer expert, Dr. Patricia Clark- Breast and Oncoplastic Surgeon. Dr. Clark is a renowned speaker at the BC3 (National Breast Cancer Conferences) and is currently the medical director and surgical oncologist at the Ironwood Breast Cancer and Research Centers in Scottsdale, AZ. You can learn more about Dr. Clark at:

Eliminating Cancer is not enough:
A woman’s function and body image matter. For most women, there is no survival advantage to mastectomy. By using oncoplastic techniques such as breast reduction or mastopexy at the time of lumpectomy, selected women with larger tumors or more complex disease can now have complete removal of their cancer and still have a good cosmetic result. While Dr Clark personally performs oncoplastic procedures, high quality plastic surgery consultation is available for all women requiring reconstruction from mastectomy, and to optimize outcomes in selected women undergoing oncoplastic procedures.  Surgery can be performed on the other breast to provide symmetry. We don’t want the breast to be a reminder of cancer in years to come.

Monday, September 10, 2018

Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL): "Where we are, and aren’t"

By: Constantine Kaniklidis Medical Research (Cancer Knowledge network) & Director of No Surrender Breast Cancer Foundation (NSBCF)-- circa 2018, September

Here some reflections, and a plea for further, more systematized and coordinated action and consensus:

First, the just published LYSA Registry data from the French Cancer Agency [reported at ASCO 2018] has shed some further light on two prognostically distinct classes of BIA-ALCLs (based on effusion, breast tumor mass, and lymph node involvement), with in situ BIA-ALCLs exhibiting an indolent clinical course that enables complete remission typically after implant removal, in contrast to infiltrative BIA-ALCLs exhibiting a more aggressive clinical course, with in fact a prognosis virtually identical to systemic anaplastic large cell lymphoma (ALCL), despite real differences. Further clarification was provided in AU-NZ studies [especially Loch-Wilkinson, Plast Reconstr Surg. 2017 Oct], higher-surface-area (HAS) textured implants significantly increased the risk of BIA-ALCL (over 14 times higher with Biocell textured implants and almost 11 times higher with polyurethane (Silimed) textured implants compared with Siltex textured implants, so there clearly is a risk hierarchy at play here.

Second, being mindful of overtreatment (always a concern), nonetheless given that BIA-ALCL related death, although rare, is predominantly due to uncontrolled local disease progression, there is a role in patients with more advanced local disease – particularly in the minority of patients whose disease extends beyond the capsule – for chemotherapeutic intervention, and at this time the best evidenced first-line therapy apart from the strongly toxic CHOP family of regimens is the monoclonal antibody brentuximab vedotin (Adcetris) based on its role in refractory in ALCL, despite the limited but still positive data of its off-label use in BIA-ALCL; and I have seen some cases of patients progressing on CHOP therapy but achieving pathological complete response (pCR) with brentuximab vedotin in the second line. Given its comparatively favorable side effect profile and higher tolerability over traditional chemotherapies, it retains some considerable appeal.

Third, for myself, given that:
(1) the NF-kB) pathway is commonly deregulated in lymphomas, and that
(2) curcumin can inhibit growth of these cell lines and increase their chemosensitivity to cisplatin, and given also that
(3) it (curcumin) increases apoptosis and differentiation of vitamin D-treated tumor cells, with direct binding of curcumin to the vitamin D receptor (VDR), and that
(4) curcumin modulates the well-known overexpression of EZH2 in anaplastic lymphomas and can down-regulate the  JAK/STAT pathway that is also incriminated in BIA-ALCL, then I have (strictly ad hoc-ly and off-label) counseled the deployment, with provisional but promising success, of a regimen of high-penetrance curcuminoids (either phytosomal or nanoparticulate) and optimal-dosed Vitamin D3 (achieving 25(OH)D assay levels of at least 66 ng/ml and above), in the small number of BIA-ALCL cases I have consulted on, but clearly this requires validation in clinical trial. And Mark Clemens' recent findings suggesting that some BIA-ALCL are associated with a chronic allergic immune response to currently undetermined antigen(s) - with IL-13 activity (associated with allergic inflammation) as well as eosinophils and mast cells surrounding the BIA-ALCL tumors plus the presence of IgE – is tantalizing in this connection of anti-inflammatory interventions.

Going Forward, Work Still To Do:
1.     I am also looking to press for the expansion of the European Commission Medical Device Expert Group (VMDEC) Task Force with respect to collection and analysis of EU-based BIA-ALCL cases, but VMDEC registry data must be coordinated with other non-EU entities – like the PROFILE Registry maintained by the The Plastic Surgery Foundation here in the States, the Australian Breast Device Registry,  among many others – if we are to establish a larger and more comprehensive cross-boundary collaborative BIA-ALCL surveillance initiatives to advance our knowledge and better serve the many women affected (and often overlooked and sometimes misdiagnosed as Hodgkin lymphoma or other entities).

2.     It is disconcerting that we still, even in 2018, lack consistent standardization and reporting regarding pathological examination of mammary implants (most institutions often continue to recommend gross examination alone).

3.     Furthermore, we are not doing enough to educate patients and their health professionals on the importance of routine surveillance after implantation.

4.     And we must finally – long overdue -bring explicit consent issues to the fore to assure fairness to patients. It would appear that most breast-focused plastic surgeons in the U.S. and the UK fail to consistently include risk of BIA-ALCL and that uniform informed-consent documents lack widespread adoption and use, so a model BIA-ALCL informed consent is required and effective efforts made to assure that the patient is not simply “allowed” to read and decipher the information as it is found in the informed consent agreement as is all too commonly the case, but that health professionals first openly and candidly discuss not only the risk of BIA-ALCL but also the common presenting symptoms (a mass, breast swelling/pain, or delayed-presentation seroma / effusion) of BIA-ALCL the patient should be on guard for which would trigger a mandated evaluation. I call this the need for “informed discussion” in addition to mere “informed consent”, and that need was best put by the UK High Court (Judgement in Montgomery ‘v’ Lanarkshire Health Board) that stated that “risk shouldn't be a numbers game, it should be part of dialogue”.

Constantine Kaniklidis of
Director, Medical Research, No Surrender Breast Cancer Foundation (NSBCF)
Oncology Reviewer, Current Oncology
Member, Society for Integrative Oncology (SIO)
European Association for Cancer Research (EACR)

Thursday, August 9, 2018

To Reconstruct or NOT to Reconstruct... That is the Question

An excerpt from "​Breast Cancer Survival Guide" by: Lisa Vento Nielsen

When you are preparing for a mastectomy, part of the process is meeting with a plastic surgeon as one of the "benefits" of getting breast cancer is new boobs. Even if just one boob is trying to kill you, you can get the poisoned one replaced and the other one can be lifted and improved, too - all covered by insurance (if you are lucky enough to have insurance, of course).

I kind of felt from before I was even diagnosed at each screening mammo that I would not reconstruct. I always felt just the idea of boobs and dealing with the screening was work enough and often thought we should all just get the boobs removed because what is the point of carrying around things that so obviously is unclear as to what causes them to get diseased. As I mentioned,  I have no history of the disease and no known risk factors and yet here I am someone with dealing with breast cancer.

I am lucky though - lucky that I had screening mammos that began at 34 and not the new ruling of 40 and up because I was diagnosed literally on the eve of my 40th birthday after some inflamed ducts at my screening at 38 put me on the 6 month squeeze plan. From my previous scan at 38 that showed minor inflammation in the duct of my right breast, which is common to breast feeding and too small to biopsy oh and had a 99% chance of staying benign was within 6 months a tumor and definitely malignant.

It would ultimately turn out to be 5.6cm of cancer with 5 of 25 lymph nodes infections - otherwise knows as Stage 3 Cancer. From diagnosis to surgery, I had only 17 days. 17 days to figure out what exactly was going on in my body - all of which was truly not known until I was operated on but more on that journey in another post.

For now, the perks of breast cancer is getting that appointment with the surgeon to pick out your new boobs. I was first told about this new process by which they take fat from other parts of your body to reconstruct your breast and when the surgeon asked to see me disrobed, her first words were "You are obviously not a candidate for the fat shifting procedure." And I said, "Why because I am too skinny??" Note: I have never been too skinny for anything. She stared at me and said, "No - it is just too risky for you with xyz condition."

On that note, I was shown before and after pictures of her work and although impressive, I did not see me in those pictures. As someone who since puberty did enjoy having boobs and wearing low cut tops now as a mom of 2 and someone whose decollete was trying to kill me, I was really in the flat camp for boobs.

I did not think it through as clearly as I could have as I was going to still have a boob - and be uneven in an extreme way. I always had one boob that was bigger than the other but I did not really process how I would now just have one boob. Period.

The nurse in the office did try to get me to see the error of my ways - she said the normal about how I was so young and would want to have the appearance of two breasts and even the office acknowledges that the surgery does not give you a normal breast - just the appearance in clothes of having normal breasts.

It seems all selfish of me to put myself under for a longer amount of time, to delay my chemotherapy and to go in for additional surgeries just to have the appearance of breasts. I was ultimately at peace with refusing the reconstruction of the diseased boob and makeover of the other.

Now, I will not say I regret it but having to do these extra steps to be people-ready is very annoying. I would often run out without wearing a bra even though my boobs were not perky and camera ready and one thing I really do lament is not getting a picture of my boobs when I had the pair I was born with but you do not get to where I have been in life without learning the issues of leaked nude photos so I just have the pics of cleavage that I often showed and no real idea of what the missing boob really looked like besides a faint memory.

Over all, I am happy with my one boob and my prosthetic but I do see maybe down the road going for the reconstruction (one other perk is you can do it at a later date, if you so choose so the window on my reconstructing is not yet closed).

The key is beating the disease, of course, but sometimes, you really want to look hot doing it and it can be hard to look hot when you are lopsided because your prosthetic won't sit right in its pocket. Just something else to manage in the time between.


Lisa Vento Nielsen, MBA, PMP is a speaker, author, career expert and cancer survivor. She has expertise and first hand experience in how to get back to “normal” after illness. Her blogs and writings are read by over 2000 people per week. She created a nonprofit foundation focused on educating cancer survivors on getting their balance after cancer.  Lisa is also a volunteer and ambassador of NYCRA (NY Cancer Resource Alliance), a contributing writer in the 911Cancer Resource website and has recently been elected to co-manage the Awareness for a Cure's post- cancer educational program.

Tuesday, July 31, 2018

Cancer Alert: Breast Implant Associated Anaplastic Large Cell Lymphoma (BIA-ALCL)

From Fios1 /9-7-2018

Report from NY1 11/10/2018

Note: This article is an overview reflecting a recent health alert from various medical centers and clinicians about a possible cancer risk resulting from a specific type of breast implant.  If you may recognize yourself to be a candidate or have received a similar notice from your reconstructive surgeon, please contact your physician to get more details.

Press Release PDF

Since 2011, the FDA identified a confirmed link to a specific type of breast implant and breast implant-associated anaplastic large cell lymphoma, or BIA-ALCL - a form of cancer of the immune system called non-Hodgkin’s lymphoma.  The World Health Organization (WHO) describes BIA-ALCL as a T-cell lymphoma that may arise within 7-8 years after the insertion of breast implants with textured surfaces.  Half of the reported cases were diagnosed with persistent SEROMA, a buildup of fluid around the implant region (see image) and presenting symptoms of swelling, pain, and redness and breast asymmetry of the affected breast.

By 2017, 359 cases of ALCL has been reported thus far and 9 deaths (2.5%) have been identified since the inception of this study where the majority of cases reported had textured implants versus smooth implants.  The very texture of the implant's coating has been said to cause inflammation and scarring that can led to lymphoma, while others attribute the texture to trap bacteria which leads to cancer.

According to the FDA, certain manufacturers have been reviewed and connected with implant-specific risks since 1999 associating their textured implants with ALCL.  Worldwide, approximately 1.4 million breast augmentations were performed in 2015. In the United States, 290,467 breast augmentations were performed in 2016; this represented a 37% increase from 2000.  BIA-ALCL most commonly occurs in patients of a median age of 52 years. The median time interval between breast implant and diagnosis is 9 years and ranges from 1 to 32 years.

Jennifer Cook, a diagnosed victim-turned advocate of BIA-ALCL awareness is promoting a global mission and educational program to support all women who are potential sufferers of this problem. "...there is extreme urgency because this disease can go from being curable with surgery to a disease that may take your life quickly-- because it's advanced...(in) a matter of a few months." In a private interview, she detailed her personal research and her actual experience of self-checking and finding anomalies and unusual feelings that breast surgeons addressed only with minimal concern. Her pro-activeness and perseverance led her to a powerful direction of self-preservation. "it was the biopsy of that lump that led to my diagnosis. I actually had a mass that was diagnosed before the explant ... like most cancers, you know the sooner you get to it, the much better chances you have.  The situation is obviously a huge concern because currently experts are advising women who test negative, that their seromas are benign and that they do not necessarily need to have their implants removed. We feel that this is misleading given the fact that at least five women we know of have recently had negative fluid but positive capsules."

Because BIA-ALCL has generally only been identified in patients with late onset of symptoms, implant removal in patients without signs or symptoms is not recommended.  Clinicians like Dr. Robert Bard (Bard Cancer Diagnostics, NYC) recommends a regular monitoring schedule for any adjustments or shifts in the current stasis of the implant and its surrounding area. "Fluid build up may be easily imaged by 3D sonography although it can be detected by MRI scans as well (9). Under ultrasound guidance, fluid may be aspirated and analysed in real time without rupturing the implant or puncturing nearby arteries."

It has been noted that among operable patients, total capsulectomy with removal of suspicious lymph nodes is the first line of treatment and complete surgical excision (capsulectomy and implant removal) resulted in better overall survival and event-free survival compared to patients who underwent a limited surgery or treatment with systemic chemotherapy or radiation therapy.

Crusader Spotlight: 
By Jennifer Hunt

In 2010, I was diagnosed with DCIS breast cancer contained within my milk ducts. Though not an aggressive cancer, I proactively elected to pursue the route of a double mastectomy over the arduous process of a lumpectomy and radiation and 5 years of Tamoxifen- knowing the risk of recurrence.  After surgery, I was encouraged by a plastic surgeon to the direction of taking on these new textured silicone implants; they don’t rupture and don’t move around once implanted.

Now 8 years later I received a letter from my plastic surgeon saying that the  textured type of implants I received can cause ALCL cancer around 7-8 years after implantation. They recommend waiting and seeing if it happens then remove and treatment would be chemotherapy. That seemed crazy to me (waiting until I get cancer) and I didn’t want to have a risk of getting cancer again now the implants I got for reconstruction could cause a whole new cancer. Had I been told there was a risk of this when I chose to get implants, I would have never picked them. And the second part of my problem is my plastic surgeon no longer takes my insurance and won’t see me unless I pay out of pocket and I don’t think it’s fair that I should have to pay out of pocket to fix a problem that I didn’t cause. After doing research on BIA-ALCL, they have apparently known about this since 2011- and I was just notified in June 2018.   I don’t believe all women who have these implants know about this yet.  What's more, they are still selling them and I don’t know why someone is not putting a stop to this.  I hope that sharing my story will help other women to be aware of this. 

About the Writer:
Mrs. Jennifer Hunt of Long Island is an 8 year breast cancer survivor turned advocate for breast cancer awareness and a fundraiser for LI2DAY.  She is also the co-founder of a Long Island based patient support resource (Fight Cancer Like a Girl Group) working with newly diagnosed women on Long Island.   Also see: Survivor Stories (Feature story of Jennifer Hunt)










9) Bard R, 8th International Workshop on PET in lymphoma, Menton, France 2018

10) ALCL In Women With Breast Implants BIA-ALCL:


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Edited by: Dr. Robert Bard & Cheri Ambrose Introduction The FDA (US Food & Drug Administration) first identified a possibl...